Just talked With Oncologist & Offered Tafinar + Mekinist Combo

Here are two links to consider when picking targeted therapy or immunotherapy!!! Best Wishes!!!Ed https://www.youtube.com/watch?v=KhV1Zyi6r8E    https://www.youtube.com/watch?v=EaWnBCN9NTY

I'm on this now, I've had to take breaks due to high fevers/shaking chills/severe fatigue.  But it melted the residual tumor that wasn't removeable through surgery so I'll keep on it … my doc has also reduced the doseage which is pretty standard with side effects.  Good luck-you may not have any issues:)

HI Rob – my husband (diagnosed Stage V in March 2012) has been on Tafinlar since Sept 2013 and is currently stable.  He was on the combo with MEK for a while but discontinued due to side effects – primarily severe chills/fevers and low blood pressure – so the MEK was dropped.  He's been on 3/4 dose of Tafinlar as a single  for years and the side effects are primarily joint pain.  He was also on Keytruda concurrently with Tafinlar for 6-7 infusions but had some brain edema issues and returned to just taking Tafinlar. His thyroid function is impaired but that happened pre Tafinlar/Keytruda.  I'd say keep a close watch for the fevers/chills and consider adding an endocrinologist to your team to address any thyroid/adrenal issues that might crop up.  Hope treatment goes easy on you.

Ann

While not currently on Taf/Mek – have been on it before and essentially no side effects.  Some fatigue, but that was about it.  

I have also been on Zelboraf/Cotellic (different BRAF combo) and had horrendous side effects. 

So results def vary by person and medication.  The side effects on all the meds are scary, so just be cognizant of how you are feeling and don’t be be afraid to contact your doc of things seem really off. 

BRAF has worked well for me, and will go back on it if my current treatment (Keytruda) is not having desired effects. 

Hi Rob578,

I was on Taf/Mek for over a year at Stage four with mets to brain and lungs.  Initially, the combo gave me fevers and chills so Tafinlar was reduced to half dose (1 75mg pill in the morning and one at bedtime) and ten mg of prednisone was added.  I started to get clean scans which was amazing. But I continued with fevers and chills so we stopped the combo. I grew a 2 cm by 2 cm tumor in my brain by the time I had my next scans. Had brain surgery and gamma knife and re-started the combo.  This time, my doc changed the timing so that I would take the combo and prednisone for two weeks and then stop all three for one week and then back on for two weeks etc.  this worked very well.  I received clean scans while on the combo and only experienced mild fevers and sometimes none.  My oncologist said that approach tends to be effective and extends the effective period of the drug.  I received excellent scans on that schedule even at the reduced Tafinlar dosage.  Some good news in your situation, my oncologist mentioned that sometimes in people with a low tumor burden (in your case none) the combo itself can be enough apparently remove cancer cells before they mutate to the point where the combo is no longer effective.  My tumor burden was at a medium level so it is less likely to be the case for me.  I would highly recommend giving the combo a try.  You can always make modifications or stop if the side effects are too difficult.  Good luck to you.

cheers!

Maggie

I am on Tafinlar Mek Combo since July 2016. ( Dosage has varied)

My Brain Metastase is in stable state (It has not grown / reduced its size)

I get Fever/Chills 3 days in a month. Doctors advised to take Ibuprufen/Paracetamol.

Last year i exericsee too much (Lifting Weights/Cardio). It increased my CK Value in blood test.

Was without both medicines for 2 weeks.

As of now I am on low dosage of Taf Mek Combo.

I have couple of scans this month. They want to increase the dosage.

If you have any issues, kindly talk with your Oncologist.